Am I too old at 55 to be diagnosed with Lupus?

[jonesy1]

My new rheumy says I am too old but the one before said she was expecting it to be Lupus.

[Jude65]

I most certainly was diagnosed with SLE at the age of 50 and I guess that you will get many replies from others saying the same. Join the club!

[Trace]

Hi Jonesy1

I'm not an expert but I would say that after reading practially everything about Lupus I think it's possible to get it at any age'

I know it's the last thing you would want to have but at least you would know what youre dealig with.

Is it possible to see your old Rheumy or a different one to the one you've just seen?

The way your feeling is not all in your head & you need to get some answers to it.

Best wishes

Trace

[Paul_Howard Partner LUPUS UK]

Hi jonsey1,

From what we've learnt, the main trigger of lupus appears to be hormonal activity and change, and lupus can often trigger after childbirth, at the menopause or during puberty. Diagnosis is usually made between the ages of 15 and 55.

[kenny]

Hi Jonesey1

Just to let you know that I was diagnosed with Lupus some 3 years ago at the age of 62!!

Tek care

Ken

[kittykat68]

i know wot ur saying i was dignoised at 41 my aunt is exatly the same as me but drs wont diagnoised as they say at her age 70 its opening a can of worms ????

[lucy-may]

Hi thought l would let you know , l was diagnosed last year age 62, so you are not on your own. Take care Merry Xmas to you x x x

[EOLHPC]

Oh boy: interesting ? And interesting replies!

Sorry, but I'm longwinded!

I am 58 & my uk diagnosis process started around 12 months go on the NHS (but I suspect my gp and my NHS pain specialist have thought SLE possible

for some time).

The first NHS rheumy I saw earlier this year was very secretive and tried me disastrously on nifedipine for raynauds, but told my gp he thought I had erythromelalgia.

I quickly got my gp to refer me toa lupus specialist rheumy at a big teaching hospital just out of our actual area, but only 1hr away. She was much more receptive and communicative, took my full history & even before all the bloods, heart, lung etc tests, told me I had lupus. n her report she says MCTD etc etc and that the SLE diagnosis is being refined. My uk lupus support group chair says it can take 3yrs + for a complete diagnosis

The 'joke' is that my 90 yr old mother (still totally alert mentally) has confessed now that I was diagnosed with lupus as an infant and again as a teen in the states before I moved to the uk in the '70s. I understand that back in the '50s & '60s lupus diagnosis was more tricky than it is now. And re the comment re hormones stimulating the developement of lupus: my mother was on an oestrogenic carcinogen in the 50s drs used to prevent miscarriages (DES) for the 9 months bearing me. It is possible this could be part of how I actually got lupus.

Now I gather that the 101 diagnosed conditions and big flares I have been managing all my adult life with the NHS add up to a classic lupus pattern, I'm told, but it is only now, since my diagnosis process began, that the NHS treats me as if I am not basically a hypochondriac. And, at 58, after all these decades of feeling like a neurotic waste of space! I still feel slightly as if I still don't deserve to be taken seriously. My condition appears not to be critical, but even so, the way I'm being helped for my vasculitis & bad infections etc helps me believe that YES I have, and anyone can, at 55+, be diagnosed with lupus and treated conscientiously. But I am well awarethat there are many GP's and even rheumies who don't believe lupus actually exists....

Sorry: a long reply to a short ?, but I guess this is the way lupus diagnosis is: complicated. I bet almost all of us have a good story behind our diagnosis, and many could've been diagnosed years earlier, before they turned 55, like me. I am not sure, though, whether I wish I had been diagnosed earlier: i guess the NHS did an ok and, at times of emergency, a grrrrrreat job of handling what I now know were my worst lupus flares without ever mentioning autoimmune disease. Maybe now in my 50s I can cope with having a significant systemic condition better than when I was younger? I don't know

Thanks to you all for making this forum such a wonderful support and source of info

[deadasadodo in reply to EOLHPC]

You are a very brave lady and an inspiration!

[jonesy1]

Thank you for your replies. I got a diagnosis of Sjogrens on Monday which does fit and was put on plaquinal along with my other meds but I am not sure that this is not just something as well a Lupus as I have sticky blood and the new rheumy reckons I also have vascular problems and referring me on.

I just found it odd that one rheumy thought it was and now this one says no.

Thanks again

Sue.x

[dgleds in reply to jonesy1]

one good thing...The Plaquinil will help it if it is Lupus too.

[marypw]

Definitely not too old - I was diagnosed at 56. I'd had aches and pains for several years, but put it down to menopause/getting older. However I realised something was wrong when I compared myself with friends/colleagues of the same age who were going to the gym/partying/walking miles when all I wanted to do was collapse in a heap, feeling like I'd been hit by a bus.

Lupus is different for everyone and doesn't necessarily follow what the books say.

Take care and Happy Christmas! x

[bettie]

Hi

Yep 53 when I was told, never been ill in my life. Flu once.

Started the menapause 50 all these things started to happen to me.

Best Wishes Bettie

[Welshexile]

Hiya Jonesy1

My late grandmother was diagnosed with lupus at the ripe old age of 73, just goes to show......you're never too old

Nadolig Llawen to All

xxxxxx

[TXJulie]

And add me as another one! Here in the U.S., they say the ages are from 15-45. My hematologist and rheumatologist both were sure it wasn't lupus. They were both wrong, it was lupus. I am 55. My rheumy told me that the week before she had diagnosed a 70 year old woman with lupus, so there you have it. I suppose that's why there are averages, right? And, then again, some of us just have really bad luck!!

[dgleds in reply to TXJulie]

exactly, its still relatively a new thing that they are trying to figure out. They say 15-45 (prolly the hormone age of fluctuation) and also I think more prone in Black people, native indian, Chinese people, Japanese People...Id love to see some stats, just because I like to think what or who etc...

[lindabrown]

I was diagnosed at 49yrs,and as someone else added it seems to happen at hormonal events ie-pubery, pregnancy and menopause.

[deadasadodo]

Hi all

Agree with all the above comments. I had had a miscarrige and a year later gave birth to my daughter, the following year (after a year of thinking I was going mad- joint pain, fevers, fatigue (whilst looking after a newborn) was diagnosed with SLE Lupus. I was 36- I am convinced hormonal changes brought mine on.

Eight years later I am battling on, every day I thank my lucky stars that I have a beautiful vibrate daughter, and Lupus well if I have to carry you with me for the rest of my life it is worth it!

Have a lovely Christmas and all the best for 2012!

Davina

[Binkey]

I was 60 year's old before I was actually diagnosed with Lupus,i am 63 now.Once I was diagnosed thing's seemed to make sense.The aches,the pain's,the infection's so,at least I knew I was not going mad.Of course,this does'nt make thing's any better but hopefully Doctor's know much more about Lupus than they did in previous year's.I hope you can start the New Year well.

[lupiedeb]

I was also told if you are dx with lupus after the menopause and you look back on your symptoms you probably have had it for years as everyone know it is hard to dx.

[Caroine]

Hi Jonsey1,

you are never too old or young to get Lupus .I hope you get the right care and lots of support that you need

Good luck

[gazorpf]

I was diagnosed at 51. No, you are not too old to be diagnosed with lupus. In fact, most lupus patients go for many years until they get a diagnosis. A diagnosis of lupus is based on history, symptoms, a variety of tests and process of elimination. There is no definitive test. It takes a skilled rheumatologist to make the diagnosis sometimes. I, for one, do not buy the "too old to be diagnosed with lupus" line. You may have had it for decades. Onset is typically between 14 and 45. You don't know when yours started.

[dgleds]

nope...

I was 56...but think some stuff was showing up at 53 ...and by coincidence had the ANA test as part of another test, and it showed positive when I was 52...The doc brushed it off, said nothing....I just remember seeing it was positive, and called ANA, and knew nothing about it...(but the big M was all around that time too...and a parent dying etc...) major stress...

major stress..hormones..5% hereditary big part of the recepie...virus too can bring it out apparently...

[Debby65]

Hi, new here. I have been having kidney problems including blood in urine, had 5 procedures, last one was open surgery to remove staghorn calculi. After that surgery, my hair fell out, I lost my appetite, lost weight, my feet are constantly swollen and my knees and fingers ache so badly. I feel like I am in a fog, can't remember much and get confused. I just turned 65, so I was thinking I am too old to have lupus. Two years ago I had a heart attack, had stents put in, I am wondering if this is lupus. Also, do I see my primary doctor or do I see a specialist? I am in the U.S. Thank you for your replies.